20 Photos That Show What Fibromyalgia Really Looks Like

Fibromyalgia is typically thought of as an “invisible” illness. But what if you look closer? What’s going on behind the brave face, the body that to others appears “fine?” Often, it’s days spent on the couch, feeling too nauseated to eat, excruciating nerve pain, and pushing through it all while few people see your struggle — that’s what fibromyalgia looks like.

We partnered with the National Fibromyalgia Association to ask our followers to share a photo of what their fibromyalgia looks like, and what symptoms they were experiencing in the photo. Though others may think you “don’t look sick,” if they take a closer look, the pain, fatigue, and strength it takes to get through it all becomes clear.

Here’s what the community shared with us:

1. “We had to leave about 10 minutes after this photo was taken because of the excruciating pain I had throughout my entire body. I was ecstatic when a part of my body would go numb so I had a little reprieve from the pain for a few minutes. My hands couldn’t grip a bottle of water, I could feel every step I took throughout my entire body. I was on sensory overload, flashing lights causing a terrible headache and the noise causing my shoulders/neck to tense up. All while having 11 medications in my system, including Tramadol. If we get to go again, I’ll have to get a wheelchair.”

2. “In this picture my service dog is actively tasking. She has alerted to my problems with balance, either a sign of weakness from fibro or an oncoming syncope episode, is giving pain relief to my aching feet and ankles, and is warming my feet due to a Raynaud’s flare up. Fibro has taken my independence, and now I depend on various medical equipment, medications, family/friends, and mostly my service dog to stay safe. I’d be homebound without my dog most days.”

6. “Fourth day of migraine, nerves are pinging, right leg and arm are numb/weak, and the pain is screaming at me from every fiber of my being. Nothing seems to relieve my symptoms, but I will continue with heat packs and kitty cuddles. Trying to tempt my body to be still. Even the dark and quiet of night is loud and obtrusive for me most nights…”

7. “Exhausted, surrounded by stuff because I have to rearrange my room. Not for fun, but because my neighbor likes to blare his music just loud enough that the vibrations exacerbate my pain (dorm life FTW). I got so fed up today I used all my spoons to move my bed to the furthest wall…”

8. “What you see on the outside: A woman smiling and healthy. But on the inside there is a woman who didn’t go to sleep until around 3 a.m. because the pain wouldn’t stop. A woman who pushes through the tears to have a normal day just so I can spend the next in bed recovering. This smiling woman in the picture is me, and at the moment it was taken I am standing in front of the hospital. (They had a living nativity for Christmas.) I had more tests.”

9. “This is what fibromyalgia ‘looks like.’ The last few months I’ve been feeling pretty good, but these last few days I’ve been battling massive fatigue. I’m ready to go back to bed, before I even get out of bed. Last night I slept 10 hours and took two hours to get out of bed this morning. My body has been stiff and achey to where I can barely move around my house to get anything done… my elbows are also getting pressure around the funny bone, making my arms feel like they’re losing circulation.”

10. “I was at a friend’s birthday gathering a few days ago… was so fatigued that the pool table started to look like a comfortable bed. And I was overheating and had a fever. I struggled to stand… And I struggled to keep the happy ‘I’m OK’ mask on… but I didn’t want to let all my friends down so I forced myself to participate. Then towards the end of the night I started to fall asleep so my fiancé took me home in a taxi. The next day I was so exhausted and in a lot of pain.”

11. “Trying to figure out how to get through the fog and pain to reach the end of the day having achieved something.”

12. “When I try to massage some of my horrible muscle knots, this is what happens.”

13. “I was diagnosed fibromyalgia in 2011. This is a picture of me and I hardly ever work out because the pain is too much. All of this was gained from carrying tension and clenching from the horrible pain every single day. My fiancee thinks I’m strong and capable of anything, but she and no one else knows how much I mentally and physically suffer every day, feeling like I’m moving in slow motion through a painful forgetful fog.”

14. “Local flare-up, sore and painful.”

15. “This is the invisible side of fibro — the side most don’t see. It’s a heating pad and a fan going at the same time. It’s having a book to read when painsomnia keeps me awake. It’s a notepad for things I think of at night because I won’t remember them in the morning. It’s having a morning and a night pill box because I can’t remember if I’ve taken my meds without them and an alarm. It’s Neosporin and Vasoline for the anxiety-picked fingers… It’s dust on the lamp because I don’t have the energy to keep up with every little aspect of cleaning like I used to. It’s all of this and so much more.”

16. “I’m choosing to show this ‘healthy’-looking photo of me from yesterday because the reality is that I don’t look sick. I almost never look sick. And that’s the worst part of this debilitating disease I’ve had for nine years — trying to explain to people how I can look ‘just fine’ while being so completely miserable. Trying to explain why I’m in twisting, agonizing pain that never goes away while looking ‘normal’ is a struggle in of itself.”

17. “Nasty bruises.”

18. “The face of [fibromyalgia]… is a face that hides what the body is feeling. I look like nothing is wrong. But I’ve just gotten out of the hospital because the medicine for FMS has made me so sick they had to take me off everything I take. Which was worse, the FMS pain or the pain from the side effects of medicine? But I smile, I push through, I work, I do everything I can to ‘look’ normal. The face, the smile, all just a lie for what dwells beneath. Pain, frustration, anxiety, fear, alone in the struggle.”

19. “Having to wear soft pants because rough fabrics like denim hurt my legs too much and having to use a wheelchair because the pain is too excruciating to walk.”

20. “Fibromyalgia is complete exhaustion, body and soul. It’s wanting desperately to go out and enjoy the sun but instead having to rest because if you don’t now, you won’t recover later.”

6. Giving and receiving support from fellow Warrior Sisters in (mostly) online support groups

7. Making sure my fibromyalgia tool box is filled with treatment options (besides medication) and my much needed “distraction actions” (for the days when distracting myself from the pain is the only option I have left)

8. Getting my flu shot (because my immune system is compromised, and as such, I do not get sick like an normal person, I get much sicker, for much longer)

9. Eating healthy food

10. Light exercise, including yoga and walking (on days when I can actually get out of bed)

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Things That Exacerbate My Fibromyalgia Symptoms

There are so many things that can exacerbate my fibromyalgia but I’ll share a handful of the common ones.

To start with, many of us with fibromyalgia have other medical conditions. I, myself, have chronic back pain conditions that I’ve found can make my fibromyalgia symptoms worse or sometimes even send it into a fibro flare. The more my back hurts, the more my fibromyalgia symptoms worsen. My skin feels as if it’s on fire, I find my ability to concentrate decreases, and I stumble my words when trying to communicate.

For many people who struggle with fibromyalgia, stress is a big thing that can exacerbate the symptoms. Something as simple as an argument, worrying or even crying can send fibromyalgia into a fibro flare or cause a variety of symptoms to surface. This is something I try my best to avoid. It’s best for all who have fibromyalgia to avoid stress as much as possible.

Medical tests or having surgery can worsen fibromyalgia symptoms as well. Only days ago I had a surgical procedure where I came to during the surgery from a lack of anesthesia. I felt the cutting, ablation, stitching and numbing shots. It was a living nightmare to say the least!

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In addition to the pain I felt during the surgery, and the surgical pain after surgery, I am now paying the price from having fibromyalgia too. My whole body now feels as if I am bruised all over and my muscles are constantly going into spasm.

Even laying in an MRI machine or on a medical exam table at an appointment can exacerbate fibromyalgia symptoms. This can cause muscle spasms from lying flat on a hard surface, which can cause a muscle to pull if you move wrong during the spasm.

I recently had acrylic nails put on as an anniversary gift from my husband. I found myself regretting them within a few hours when my arms, hands and fingers were unbelievably sore. The amount of filing and buffing done flared my fibromyalgia symptoms, and caused me to rethink having acrylic nails and going through all the upkeep to keep them beautiful. I decided it wasn’t worth the added pain.

A lot of exercises or workouts can cause your body chaos when living with fibromyalgia as well. I’ve always loved to dance, so when they came out with Zumba for the Wii I was thrilled…until the morning after I tried it. I could barely walk, every muscle in my body felt like they were beaten and bruised. Muscle spasms galore. I talked with my doctor and she laughed when she told me Zumba was not for people with fibromyalgia! This was in my early years of learning to live with fibromyalgia. I was told walking, yoga, pilates and water were the direction I should go.

Activity levels are another thing that can intensify fibromyalgia symptoms. It teaches us the hard way to pace ourselves or we pay the price for over doing it. I’ve learned to take more breaks throughout my day to minimize the fibromyalgia symptoms. I’ve also learned to pace myself and keep my week balanced so I’m not physically drained early in the week.

In addition to the things above, there are so many other things that can exacerbate fibromyalgia symptoms. Some of these things we already know about and we try to limit ourselves from them. Then there are others that we haven’t experienced yet that we will learn as we go.

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What You Don't Know About My School Absences

Every year, on the last day of school, I would proudly hold up my perfect attendance certificate, feeling like I was queen of the world. The free pizza from Pizza Hut or the minor league baseball tickets were totally worth coming to school daily, even with the occasional stuffy nose or sore tummy. When I got to high school, I refused to miss a day of school because I needed to make sure I didn’t fail my finals.

During my freshman and sophomore years, I missed a day of school per year. But then the diagnosis and junior year came. I was put on a 504 special education plan that allowed me to miss as many days as needed for doctor appointments. And so the once “perfect attendance queen” was no more.

Many days, I would come to school for two hours, leave for an appointment, and come back for the last two hours of the day. Other days, I would miss half a day, or even an entire day. I’m sure other students noticed that I was only at school three or four days a week, or I was constantly late to class due to being in the nurses office. But most kids didn’t say anything.

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I walked in to my seventh hour biology class with mascara running down my face. I quietly took a seat in the corner and pulled out my text book. I looked up to see the girl sitting across from me whisper, “Where have you been?” I shook my head and continued working, hoping she would get the hint.

“Hey, was it your fibro-me-al-jah?” I shook my head yes. “I swear you just make that up to skip school.”

I forced a laugh and pretended to continue working.

On a cold winter day, I snuck in to my history class when out of the blue a boy shouted out to the teacher, “She comes late to class every day, and you never count her tardy!” I looked down and mumbled under my breath, “Did you just have to take two pills and be brushed with a sensory brush?”

A year later, I am still questioned about my absences and I will give more information, yet I do not tell the entire story. But now I will.

Do you know what it’s like to wake up at 4 a.m. to drive three hours to the hospital in morning traffic? Have you ever wished to be at school instead of in the hospital with dozens of acupuncture needles in your back? Do you worry about your dropping grades, pile of make-up work, and having to teach yourself the lesson? Have you ever sat in class biting your tongue to hold back to tears because your pain is flaring? Do you stay home some mornings to sleep in because you were up all night, due to a a medicine reaction?

No. No, it’s likely you don’t know what it’s like to be the chronically sick teen who misses 350 hours of school in a year to attend doctors appointments – all while she still makes all A’s, holds an officer position in FFA, and has over 60 dual credit hours. You don’t know what it’s like to do homework with IVs in your arm or write a paper in a waiting room. You don’t know what it’s like to come back to school after sitting in an emotionally draining counseling session. You don’t know what it’s like to be me, so please don’t judge me for missing school. Trust me, I’d so much rather be at school.

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How I Describe Fibromyalgia to People Who Have Never Felt It

Have you ever wanted to feel what it’s like to have fibromyalgia? No? Heh, me neither. But I’ve gotten to know the ins and outs of it very well (certainly better than I ever wanted to) and should be able to acquaint you with enough of my experiences that you’ll have a better understanding of anyone in your life who may have a chronic illness, pain, or other health struggle. So take a deep cleansing breath and get ready to try something new. A journey through my eyes, if you will.

Remember the last really bad sunburn you had — the kind that makes you aware of every inch of your skin? It itched all over, felt tight and hot. Let yourself feel it now — imagine having that tight sensitivity and flinching awareness to every touch spread to every part of your skin. Now you can all feel the seams in your clothes and you’re even hyper-aware of where your fingers touch each other and the folds of your skin at your elbows and knees The collar of your shirt is tight and the waist of your pants is uncomfortable, claustrophobic.

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But touch isn’t the only sense that’s heightened. Sounds are starting to get louder than seem absolutely necessary, and often unpleasant. When you go driving, lights may seem too bright, and sometimes glare unexpectedly. You have to drive a lot more carefully at night — the headlights suddenly seem like they’re out to get you sometimes. Smells are too strong, and scents that once were pleasant, or foods that you found yummy or just indifferent, my now be vile and sometimes completely out of the blue, they’re just nauseating.

Have you ever had the flu? That nasty seasonal kind that makes you so sore all over that even after taking four Motrin you can still feel your whole skeleton? If you have it’s a helpful reference. If not, be glad and keep getting your flu shot! Imagine waking up with that achy heavy feeling one day, only it’s alarmingly worse than usual. You groan to yourself, think, “Well, that flu shot didn’t work,” and sigh, expecting it to go away after a week or so like it did the last time. Only after two weeks, three, you start to worry. And then, it gets worse.

It starts to make your limbs heavy, tired. Similar to the feeling of walking in sand, you may forget some days that you don’t have the energy you used to and overdo things, only to pay the energy debt for two or three days in bed. On these days, and some random days for no foreseeable reason at all other than fate’s cruel sense of humor, you may wake up with only the energy it takes to get out of bed, get dressed and eat.

The sidekick of chronic fatigue and pain is something called “brain fog,” which sounds silly. It’s not. It can make you feel foolish and embarrassed, and try to hide it and laugh it off as nothing. But your keys may end up in the freezer, the milk might go in the cupboard, and you’ll may find yourself in some random room in your house staring at the wall and asking yourself, “What was I going to do now?” four times a day. Shopping is a joke, even if it is a lot more… whimsical now. You touch all of the fabrics of the clothes to see if they’re soft enough, and tell your spouse, “Oooh, feel this towel!” Don’t worry, they’ll get used to it. My husband has to remind me of what I was looking for whenever I get distracted by those blasted beckoning sale stickers, or pretty towels… Target is a dangerous place.

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But believe it or not all of this – every last bit of it — pales in comparison to the pain. It will become your very best friend, your constant new companion. Some days it’s tolerable, and only makes everything a little bit brighter and the corners of your eyes a little tighter. It makes your temper quick, but you’ve got a pretty good handle on things (just don’t ask your husband what he thinks). Other days, well… those days we don’t like thinking about so much. Some of them will be spent looking for distractions, like books and movies. You likely know the movie theaters with the comfortable seats, because the ones that are uncomfortable are the ones you can’t go to anymore. On the other of these days, the bad ones, you might just pretend you don’t exist.

I know I’ve painted a pretty grim picture here, and one that you may or may not believe is exaggerated. Whether you do or not probably has a lot to do with whether you have had experience with chronic pain or someone who does. But I’m going to tell you something else that you may believe or not, and that’s that I’m grateful for my fibro. It’s taught me more about myself and life than anything else I’ve ever experienced.

I never knew how soft my Yorkie’s fur was before, or how lovely the smell of rain would be after smog. I wasn’t able to appreciate as well the music of the rainfall on the roof when I shut my eyes after a long day. There is balance to be found in the pain, for me, when I look for it.

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Tips For Sticking to a Schedule When You Have Fibromyalgia

Sticking to a schedule when you have fibromyalgia and chronic pain can be difficult, if not impossible. However, I have also found that it is really important to maintaining my health as much as I can. I want to share with you what my schedule looks like and then give you some tips for setting your own schedule and sticking to it.

My Schedule

I am a graduate student in an online program and I do some freelance writing and communications projects on the side. Because of this my days are pretty flexible. I don’t have to wake up at a certain time, I can schedule meetings for later in the day, and I can stay up until all hours of the night. But living in this very unstructured way was keeping me from being as productive as I could be and that in turn was causing more frequent depressive episodes and higher pain levels. So, I decided to make myself a schedule.

I wake up at 8:30 in the morning. The first thing I do is read my Bible and write down three things I am thankful for from the previous day. Starting my day on a positive note has been wonderful and I can do these things from bed, so it gives my stiff joints and aching muscles time to wake up as well. Then I start my work day from bed too. I check social media and schedule my own social media posts for the day. Doing all that takes about an hour, so at 9:30 it’s finally time to get out of bed. I roll out my yoga mat and do a gentle 20 minute routine. This really helps to loosen my muscles so that they are ready to sit for a few hours during the rest of the day.

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At 10 a.m. I make my morning coffee, get dressed and do my hair and makeup. I only leave the house two or three days a week, but getting ready everyday actually helps me feel better somehow (I’m sure my husband also appreciates the effort.) From 10:30 to noon I focus on school work, reading, writing, and researching for my graduate degree. If I am in more pain than usual I can do this from my bed or couch with my tablet. At noon I fix myself something to eat and check social media again. If I need to I can also fit in a small nap here.

At 1:00 it’s time to get back to work. I will work on my freelance projects in half hour increments with 10 to 15 minute breaks in between until 5. Then I make dinner and wait for my husband to get home from work.

After dinner I have more time to rest or do something fun with my husband. At 8:30 I pull out my yoga mat and do another stretching routine. This helps me sleep better, especially if I’ve been dealing with painsomnia for a few nights. After stretching I will soak in an Epsom salt bath and get ready for bed.

Lights out happens between 10:30 and 11:00 which gives me approximately ten hours to eventually fall asleep and still get a good eight hours in.

Now, let’s look at some tips that can help you set your own schedule.

Tips for Setting a Schedule

Make it work for you. I shared my schedule just as an example. If you work part time or have children or if your life differs from mine in any way, your schedule will need to accommodate that. I know that I can’t just hop out of bed first thing in the morning, so I thought of things I could do from bed and scheduled them for the first hour after I woke up. By taking inventory of your own body’s quirks as well as your responsibilities you can create a schedule that isn’t a chore to stick to.

Be flexible. You may wake up one morning with a migraine or a fibro flare and have to set your schedule aside for the day. Don’t feel guilty about it. Your schedule is supposed to work for you, you’re not supposed to work for it. Include times for rest and play. Before I had a schedule I would feel guilty for stopping a task in the middle to lie down or watch a YouTube video. Now I have a schedule with time specifically set aside for short naps and breaks and it has become easier to stay focused on a task for 10 more minutes and then take a break guilt-free.

Invite others to take part in your schedule. If you live with other people it will be important for them to know your schedule and understand why you have set it up the way you have. I have shared my schedule with my husband and invited him to take part in it in his own way. He doesn’t need 10 hours of sleep, but he comes to bed at the same time as me and when we turn the lights out he listens to podcasts or catches up on emails for an hour or two before he is ready to fall asleep as well.

Don’t change your schedule drastically on the weekend. I have tried to stick to a schedule in the past, and it never worked because I didn’t have a schedule for the weekend too. It is really important for those with fibromyalgia to have a consistent sleep schedule as much as possible. So, I don’t do any work on the weekend, but I do keep my morning and evening routines exactly the same as they are during the week. In between I can go out to brunch with friends, or go for a walk with my husband or go to a matinee movie showing. Keeping my bed time and the time I wake up the same 7 days a week has really helped my quality of sleep.